Tag: Death And Dying

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Dying on the streets: UVic study examines palliative care for the homeless

‘We were hearing all kinds of stories, and service providers themselves were feeling very distressed’

By Roshini Nair

UVic researcher Kelli Stajduhar says it's not atypical people living on the streets wind up spending their last days in places like cars or parks.
UVic researcher Kelli Stajduhar says it’s not atypical people living on the streets wind up spending their last days in places like cars or parks.

It’s an uncomfortable truth, but some people spend their last days in parks, streets and their cars, alone and in pain.

University of Victoria researcher Kelli Stajduhar has been leading a study looking at palliative care options for the homeless after hearing stories from outreach workers about people dying in the streets.

“We would really like to think as a society that we care for our people, especially at the end of their lives,” she said.

“[But] we were hearing all kinds of stories, and of course, these service providers themselves feeling very, very distressed at the kinds of things they were witnessing.”

Poor relationship to health care providers

Stajduhar — a palliative care nurse — is a strong advocate for better quality end-of-life care, and she said that people on the streets face significant barriers to getting care.

For one, they might not be diagnosed properly or too late.

Many homeless individuals come into the emergency room in pain but leave early or are turned away, she said.

Eventually they are diagnosed, but it is too late.

“They’re finally diagnosed with an illness that’s so far advanced even if a treatment option was offered, there’s really no benefit.”

Furthermore, Stajduhar said homeless individuals are often denied pain medication because health-care providers assume they’re just trying to access drugs.

These negative experiences with the health care system leave homeless people distrustful and unwilling to seek out care, she said.

“We’ve got these situations where people are suffering needlessly, and a big part of that is because of our own biases and stigmas against people.”

Staying within the community

Stajduhar said since many people on the streets are isolated and estranged from their loved ones. Often, the only community they know and love is the downtown community.

“We need to be seeing people and providing service to where they’re at, where they are most comfortable.”

Kelli Stajduhar, a professor of nursing at the University of Victoria, has been a palliative care nurse for three decades.
Kelli Stajduhar, a professor of nursing at the University of Victoria, has been a palliative care nurse for three decades.

But shelters and outreach workers are not equipped to provide palliative care, she said, and there is often no coordination between different groups to provide the best sort of end-of-life care.

Stajduhar said her team is looking at how palliative care providers can be flexible enough to meet people in the community.

One especially promising model is Toronto’s PEACH team — or the Palliative Education and Care for the Homeless team.

The PEACH team has outreach doctor, nurses, and social workers who see people wherever they happen to be — in shelters, on the streets or in a housing complex.

Stajduhar said she can imagine a similar model in Victoria, although there would need to be more funding.

“We have the nuts and bolts in our community to do that.”

Complete Article HERE!

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Q+A: How Should You Talk to Your Doctor About End-of-Life Care?

by Lauren Ingeno

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No one wants to talk about death. But when a loved one is faced with old age or a serious illness, there are choices that need to be made. How does the patient feel about life-sustaining measures in the face of terminal illness? Does he or she have strong feelings about mechanical breathing, CPR or chemotherapy? What factors will be most important to the dying person — physical comfort, no pain, treatment costs?

As an emergency medicine doctor, Laura Vearrier, MD, a clinical assistant professor at Drexel University College of Medicine, sees plenty of family members having to make these decisions for sometimes impaired or incapacitated patients. Stress is high. Emotions are involved. What’s worse, there isn’t time for physicians to sit down and properly explain medical procedures or lay out options.

Advanced care planning allows people to maintain authority in their medical decision-making. However, the current legal framework for advance directives make them inadequate as an effective end-of-life planning tool, argues a recent paper from Vearrier, published in the HealthCare Ethics Committee Forum.

Her solution? More mandatory, frank communication between primary care physicians and their patients about the end of life and medical care — long before a patient is unhealthy.

Vearrier weighed in on problems with the current end-of-life care paradigm and how it can be improved.

What is end-of-life planning? Who does it primarily concern?
A lot of people don’t start talking about end-of-life care until they have a chronic disease, but advance care planning is really something that every adult should be thinking about early on, long before a time of illness, when there are a lot of emotions involved. End-of-life care decisions fall on a continuum that ranges from a focus on prolonging life with all available technology, to a focus primarily on comfort. There are decisions people need to make about, for instance, whether having more time alive with family and friends is preferable, even if that means prolonging suffering and giving up independence. Advance directives, commonly known as a living will, allows you to document your end-of-life medical treatment preferences. A healthcare proxy allows you to designate a person you trust as a decision maker on your behalf.

How did you become interested in the issue of end-of-life planning?
In the Emergency Department, I see many patients who are critically ill, and their families haven’t thought about their options ahead of time. When doctors present families with options about their loved one, they often don’t understand what the doctor is talking about, much less what their loved one would want. And with having to deal with the stress of a sick family member, it’s even harder to process new information.

 How common are living wills?
According to the 2008 Advance Directives and Advance Care Planning: Report to Congress, only 18 to 36 percent of the adult population has completed advance directives. And even those with serious medical conditions have completed advanced directives at only a slightly higher rate. A study of cancer patients in 2000 showed that only 9 percent of patients had discussed advanced directives with their oncologists, and only 23 percent of the remaining patients indicated they wished to do so. There are also differences between racial and socioeconomic groups. The report shows that white race and a higher socioeconomic status are related to a greater likelihood of having a living will.

What is the Physician Orders for Life-Sustaining Treatment Paradigm?
POLST was developed as a response to the failed process of advance directives as an end-of-life planning tool, but it is not intended to replace advanced directives. It is a health care planning tool that encourages doctors to speak with patients who are very ill and can be transferred between different health care facilities. A POLST form is completed by a health care professional rather than a patient. The POLST form identifies “Do Not Resuscitate” orders, but it also lists other treatment preferences, like whether a patient would wish to go to a hospital or stay home.

You are critical of the POLST form in your recent paper. Why?
POLST has played an important role in increasing the documentation of end-of-life preferences. However, the problem remains that people do not really understand a lot of their options. The POLST form uses a lot of specialized jargon, and it can be even more confusing than advance directives. Even social workers who discuss the forms with their patients have a poor understanding of some of their options. So when it comes time for a physician to interpret the orders, they might not really be fulfilling the patient’s treatment wishes.

What surprised you the most when researching this topic?
I was surprised about how poorly people understand their options when it comes to having to make decisions about end-of-life care and also how uncommonly people discuss it with their physicians. Physicians may not even be aware that their patients have an advance directive.

What’s the solution?
Increased communication that occurs on a routine, non-emergent basis. I think talking about the end of life and medical care should be a discussion that starts when someone is healthy, with the awareness that it’s something that may, and probably will, change over time. Since treatment preferences may change with age, health status and the current state of medical technology, discussions should occur on a yearly basis with every adult patient in the case that something happens to them. Also, everyone should be discussing their preferences with their families.

A lot of physicians are hesitant or may feel poorly prepared to have these discussions, which is why they don’t happen until someone is ill or has exhausted all of their treatments. Then lack of time becomes a barrier. To change this, it should be something that’s done on a routine basis at every yearly check-up with a primary care doctor. It’s just like the “in case of an emergency” safety protocols that are communicated on every single airplane flight. It’s repeated every time, so everyone is aware what could happen and what the procedure would be. There needs to be a culture shift, so that patients are educated and empowered about their treatment options, in case they are ever in a position where they are no longer capable of making those decisions.

Complete Article HERE!

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Opening the Window

This doula helps clients make the most of death

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Death doula Shelby Kirillin chats with client Kim McGaughey.
Death doula Shelby Kirillin chats with client Kim McGaughey.

The Angel of Death is surprisingly upbeat.

“I know death is sad, but what’s wrong with dying?” Shelby Kirillin says, green eyes alight. “It’s OK. We’re all going to do it.”

Kirillin is a death doula — someone who guides the dying, and their families, through the end of life.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

In 18 years as an ICU nurse specializing in neuroscience, Kirillin witnessed too many bad deaths. She heard frantic families ask for every procedure possible in order to prolong life, instead of easing their loved one’s passing. She saw doctors who advocated continuing medical intervention, even when it was obvious that nothing more could be done.

Then in 2012, Kirillin, along with four Virginia Commonwealth University Medical Center colleagues, helped care for a fellow nurse who was dying of cancer. Their assistance allowed their friend to die at home, peacefully. And Kirillin found her new calling.

Kirillin began an apprenticeship with a death midwife in Canada and is completing her certification by the International End of Life Doula Association. Last year, she began practicing in Richmond. Insurance doesn’t cover her services; her fees are based on the time and level of support a client requires.

She’s not a hospice nurse, who manages patients’ medications and physical needs. She doesn’t give medical advice, nor is she a grief counselor. Rather, she is an “end-of-life transition coach,” as one client dubbed her, who guides people through the emotional and spiritual experience of death.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

“I can’t take away the fact that you have to kneel in a mountain of sorrow,” she says, paraphrasing end-of-life guru BJ Miller. “That can’t be avoided. But what I can do — I’m very much like a birthing doula — I hold the space.”

Family members may be mute in their grief, or mired in doubt, or consumed by guilt. Kirillin helps them to act, to labor along with their loved one. “It’s a beautiful day,” she may say. “Let’s open these windows.” Or, “You want to lay next to your mom? Here, let me move her. Lay next to your mom. Hold her. It’s okay.”

Mary Bolling “Mary Bo” Gassman found out she had cancer just seven weeks before she died. Her husband, Ken Gassman, couldn’t accept it. “I’m an alpha male, OK? And I’ve always been the family patriarch,” Gassman says. He made an executive decision: “We’re going to beat this cancer.”

As a result, Gassman and his oldest daughter, Elizabeth Gassman Chéron, didn’t agree on how best to manage Mary Bo’s symptoms. Chéron wanted to relieve her mother’s suffering; to her father, administering morphine meant bowing to the fact that his beloved wife was dying.

Kirillin became the ambassador, mediating between father and daughter. She encouraged Gassman to stay focused on the goal: not curing the incurable, but giving his wife a reason to wake up the next day, and the day after that. When Chéron admitted, “I just don’t know what to do,” Kirillin told her to trust herself. “You’re doing great,” she said.

On a cool October afternoon, Kirillin said it was time to open the windows. The breeze carried in the sweet scent of wildflowers, Gassman remembers. “A minute or two later, it was gone.” It was 4:32 p.m., and Mary Bo had passed away. “I think Shelby knew how she was going to ride out of there,” he says.

While Kirillin serves the family and friends of those soon to depart, she is chiefly concerned with the desires of the dying. Long before the curtain closes, she says, everyone should clearly state what living means to him or her. Kirillin’s own advance medical directive says, “If I can’t go to a baseball game, follow it, enjoy it and, the next day, remember it, I don’t want to survive.” It’s funny. But it’s true.

When dying becomes a possibility, she speaks with her clients about how they envision their last days. Most people say they want to die at home, for instance, but a hospital may offer more comfort for a patient who’s short of breath.

Kirillin helps people articulate what they want their death to look like, sound like and even smell like. Silence or songs? Coffee or lavender?

“When we die, we lose control,” says her current client, Kim McGaughey. “You don’t have any control over what’s happening, how you’re going to die. But I’ve got a lot of control over the beauty, and how special it is, and how I create this experience.”

At first, McGaughey didn’t want a death doula. After an eight-year battle with cancer, she had just been told she might have weeks to live, instead of months. She was feeling overwhelmed and didn’t want to complicate her dying. Then she met Kirillin and changed her mind.

“I might as well figure out how to do it, so that I enjoy it,” McGaughey says. “I know that sounds weird.”

Kirillin answered McGaughey’s questions about what death feels like. She gathered healing circles of friends and helped McGaughey write her own funeral service. McGaughey has asked her friends to write down memories of times they’ve spent together, and she wants these stories read aloud as she is dying. Everything is prepared.

“I want people to understand that death gets beautiful,” Kirillin says. “Death is amazing.” And sometimes, she says, it feels just like birth.

For more information on death doula services, visit Kirillin’s website, Peaceful Passings.

Complete Article HERE!

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Burials, cremations, dissolving: the new ways to die well

BY STEPHANIE BOLAND

new ways to die well

Life after death is changing – thanks to scientific innovation. The best time to plan is now.

What happens to us after we die? It is one of the most profound spiritual questions, but also a practical puzzle. After all, whatever you believe happens to the soul after death – if you believe in a soul at all – there is irrefutably a body for someone to deal with. While there are many emotions that can make it hard to think about what you want to happen to your body, it need not be traumatic.

At least, that is what the researchers at the Corpse Project want to remind people. Set up last autumn and funded by the Wellcome Trust, this UK research programme has just published its first findings on what we might do with our bodies after we die.

I meet Sophie Churchill, the project’s founder, at a café in Queen Mary University of London. The goal, she tells me, is to help find ways to “lay our bodies to rest, so that they help the living and the Earth”. It’s not a case of being dispassionate but rather a quest to balance the social and cultural aspects of death with the scientific.

Sometimes, aspects of death that people initially baulk at can become more acceptable through conversation. One relatively new process, sold as a greener alternative to cremation, involves dissolving the body in heated alkaline water. “I was with 15-year-old urban teenagers, and you could see them scowling at the thought of being dissolved. But the more we talked about it and considered how odd it would once have seemed to go into machines and be cremated, [the more] they started to reconsider.”

Churchill points out that cremation, too, is a relatively recent phenomenon. The first official cremation in the UK took place in 1885, and it was only in the 1960s that the Catholic Church, for instance, accepted the practice and lifted its ban. Now, over 70 per cent of people who die in Britain are cremated.

Churchill is discovering that people can be open-minded, even if their beliefs are initially strongly held – though she admits that it may “still be a generation or two before new forms are accepted”.

“People will say, ‘Mourners always need a place to return to, to memorialise.’ But there are lots of people who do scatter ashes.” So, part of rethinking death might involve reassessing what we are comfortable with. I wonder if our general reluctance to talk about death makes it less likely that we will encounter different perspectives on how to deal with bodies.

Churchill’s studies with teenagers seem to support this. When asked to think about their own deaths, many of them were quick to engage with the idea, she says – “Being sent out to sea and burned in a boat, Viking-style, seemed to be very popular!” – and it was often their teachers who were more squeamish.

The Corpse Project is just one of a growing number of organisations committed to tackling the discomfort around death and dying. The Order of the Good Death was founded in 2011 by the mortician Caitlin Doughty and aims to “make death part of your life”.

The group of academics, funeral industry professionals and artists encourages people to educate themselves about dying, and even to become “death positive” by learning to accept and engage with their mortality. Its website covers everything from sky burials, in which corpses are left to be eaten by the birds, to how it feels to bury a relative if you’re a funeral director.

So what are the best options for someone wanting an environmentally friendly death? Until new methods such as dissolving become easily available, small tweaks can make a big difference. Doing cremation well, for instance, is important: the Corpse Project’s work partly involves investigating what sort of schedule allows crematoriums to operate at maximum efficiency.

If you want to be buried, it might even be a case of choosing a sustainable wood for your coffin. The Corpse Project is also investigating optimum burial depths and whether burials could be done strategically to enrich the soil where this is needed.

“But science never changes opinion by itself,” Churchill says. Luckily, every death is different, and can be a chance to invent meaningful rituals that incorporate innovative methods. The important thing, she stresses, is to think about it early, as one would with a will or life insurance.

“One day, this hand . . .” – she lays her hand on its back, limply – “. . . will do this. Twelve hours later, it’ll be a bit pale and clammy. And that will be it. The day will go on, with people going on having coffees, and so on.” She looks around her at the students milling in the sunshine. “To me, the last big challenge is to do that well.”

Complete Article HERE!

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Boy’s summer spent caring for grandma’s dying dog

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Trevor Lilley, 10, devoted his summer to taking care of his nana's dog. Hershey, 4, was dying of cancer.
Trevor Lilley, 10, devoted his summer to taking care of his nana’s dog. Hershey, 4, was dying of cancer.

Rubbing his hand over Hershey’s head, Trevor Lilley adjusted the paws of the chocolate lab laying on his lap.

Hershey looked up at the 10-year-old boy briefly before dropping his head down again.

Hershey was mostly lying on a dog bed at the end of a couch, but Lilley had carefully squirmed beneath the dog to pet his face and shoulders.

Beverley Brown, Lilley’s grandmother, watched the two as tears filled her eyes.

In June, Hershey, who had just turned 4, was diagnosed with cancer. Since that time, Brown’s grandson had cared for the dog.

“They gave us some options,” Brown said. “But none of them were good.”

Brown said she had gone on vacation in June and when she returned, the family noticed Hershey had a slight limp. At first, the family vet thought Hershey had torn a ligament, Brown said. But when the dog’s condition continued to deteriorate, additional testing revealed a cancer diagnosis.

“They showed us the X-rays and his whole pelvic bone looked like a sponge,” Brown said. “It was completely full of cancer.”

“It looked like it had dissolved,” Lilley said as he reached for a dog toy.

Brown was told Hershey’s leg could be amputated, but the dog would still require chemotherapy and his diagnosis for survival after the surgery was only eight to 12 months. The family discussed putting the dog to sleep, but the vet did not feel it was time, Brown said.

Beverley Brown talks about her grandson who cared for her dying dog this summer.
Beverley Brown talks about her grandson who cared for her dying dog this summer.

We weren’t sure what we were going to do,” she said. “He wouldn’t eat and wouldn’t drink so we just kind of made him hospice.”

Brown, who works as a hospice nurse, said her grandson offered to spend his summer caring for Hershey who required medication 24 hours a day. He told his grandmother he would come to stay at her house while everyone was at work.

“Usually he just sleeps all day,” Lilley said.

But Lilley’s return to school this week meant no one could stay at home with Hershey to give him his medicine, help him outside or clean him up after he went to the bathroom.

Seeing the dog struggling with pain, the family said it was time to euthanize Hershey and made special arrangements last Saturday for the procedure.

Sitting in their living room the day before Hershey was put to sleep, Brown and her husband openly grieved for a loss that had yet to occur.

“This dog was a holy terror when we got him,” Brown said. “He chewed everything he could chew.”

Lilley was quick to point out the corners of the coffee table and end tables that showed signs of a nibble or two.

Roland Brown, Lilley’s grandfather, listed various items that had found their way into the chocolate lab’s mouth, including a remote starter for a vehicle and a television remote controller.

“He dug up the electric fence,” Lilley said tossing a red ball toward Hershey who showed no interest in playing.

“The first year got pretty expensive,” Roland Brown said with a laugh as he brushed away at the wetness near his eyes.

“We contemplated getting rid of him,” Beverly Brown said trailing off in silence.

Hershey was on pain medications, his owner said, and had stopped eating before he was put to rest.
Hershey was on pain medications, his owner said, and had stopped eating before he was put to rest.

Lilley stayed pretty quiet during the discussion and was willing to talk about other family pets, but contributed little to the conversation about Hershey.

Ginny Brancato, founder of RainbowsBridge.com, said Lilley’s silence is common for a child of his age.

Brancato, who lives in Florida, started a website for people who have lost a pet in 1998. She now has more than 20 years of offering free online grief support to people of all ages and a website with more than 10,000 pet memorials.

“I looked for someone to help me when I lost my cat FiFi, but there was nowhere to go for pet loss,” she said.

Brancato set up a grief support system that includes forums, chat rooms, tips and advice for those grieving a pet along with memorials to celebrate a pet’s life. She was touched by Lilley’s care of his grandmother’s dog.

“People don’t realize how traumatic and confusing death can be to a child,” she said. “He needs permission to work through his grief.”

RainbowsBridge.com offers a number of tips for children coping with pet loss such as encouraging a child to talk freely about a pet and discussing death and dying after the pet’s death.

“It’s final and sometimes kids don’t get that,” Brancato said. “And society makes it harder for little boys to grieve because they are told not to cry. Often the first thing they ask when they do talk, is ‘why?’”

She suggested things like planting a tree in a pet’s honor and donating time at a local shelter as ways to help older children with the grieving process.

Beverly Brown said Lilley did not talk about Hershey’s death until this week.

“Yesterday, he finally asked me for details,” Beverly Brown said on Friday. “He asked me questions about the euthanasia process and how Hershey did. I said, ‘you know Trev, it was very peaceful.’”

Beverly Brown told her grandson how Hershey had licked her in the face right before a serum that ended his life was injected.

“He said, ‘Nana, he was just telling you he loved you and thank you,’” Beverly Brown said. “I told Trev, I felt like that was exactly what he was saying.”

Complete Article HERE!

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My grandmother’s last months

By Gaia Squarci

Chiara Micheletti helps her mother Marisa Vesco take a shower in Cossato, Italy, June 7, 2015.
Chiara Micheletti helps her mother Marisa Vesco take a shower in Cossato, Italy, June 7, 2015.

My grandmother’s life and mine overlapped for 27 years. I always called her “Nonna.”

Our age difference and profoundly contrasting values and way of thinking did not prevent us from developing a strong bond and a relationship punctuated by mischievous games and moments of tenderness and humour. We were amused by our differences.

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“You know, I was still young when you were born,” she told me a few weeks before she died. “It’s a little like we grew up together.”

At a lunch table a few months earlier in Milan, I learned from my mother, her daughter, that Nonna, 85, suffered from incurable liver cancer. Years before, she had already survived two bouts of breast cancer.

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Nonna would tell me time and time again that the news of my birth had given her the strength to fight.

When I learned that she was sick again, I had just landed in Italy, where I would be for only three days before flying back to New York.

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Even more heartbreaking than the fear of saying goodbye to her was the fact that my grandmother did not know how sick she was. My mother and aunt believed she could not bear the thought of a third bout with cancer, this time, affecting her liver. Nonna was told by family members that her liver was ill.

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No one ever mentioned the word “cancer.”

Because of this, one question haunted us until the day she died: Did we have the right to know the truth about her condition when she did not?

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Marisa Vesco embraces her nephew Luca Squarci.

Nonna spent most of her last months at home, surrounded by family. She reconciled with the idea of death and said she could slowly feel it coming.

Doctors felt that surgery and chemotherapy would be pointless.

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In the midst of all this, I realised my mother was losing her mother.

After moving back to Italy for a few months, I witnessed the range of my mother’s emotions and the energy she devoted to the time they had left together.

Nonna’s world shrank to a few walls and fewer streets. In this narrow existence, every detail and daily act took on deeper meaning.

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One of the things my mother treasured most was giving her mother a bath. She did not hesitate to touch her old body, and she did not want others to do it on her behalf.

I joined my mother and grandmother in the bathroom to quietly observe them with my camera.

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As I experienced those precious moments, I imagined myself at an older age and thought about how time changes one’s perspective on being a woman.

As my grandmother faced my lens, completely naked, her body bearing the signs of past and present illnesses, she did not show the slightest bit of shame – only trust and pride.

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If you spoke with people in Nonna’s town they would say she never left the house without being enveloped in a cloud of perfume, her white hair perfectly coiffed and her face tinged with makeup.

I was surprised by the way she confronted being ill without losing her femininity. She was able to poke fun at herself. More than once she asked me, “Am I going to end up on Vogue or Marie Claire?”

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On Oct. 11, 2015, the day Nonna died in Biella, Italy, I was across the world in Brooklyn, New York. I had spent five months with her, celebrating her life instead of mourning her death.

I remember taking a walk through the Greenpoint neighbourhood of Brooklyn and staring for a while at kids competing in a race. I was unable to come to terms with the fact she was no longer a part of the world around me.

I struggled with the concept of death and the abstract emotion we call grief. I found peace only when I returned to Italy to spread Nonna’s ashes.

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My family and I walked to Nonna’s favourite place in the mountains not far from Cossato in northwestern Italy, the town in which she had grown up.

Her ashes felt heavy in my hands. I threw them far up into the air, and they fell all over the grass, and all over me. My mother, brother and aunt did the same, again and again.

In the end, we were covered in Nonna’s ashes and so was the field around us.

Months later, my mother sent me a photograph of that field. It was completely covered in flowers.

Complete Article HERE!

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Mario Fonovic on accepting death and smiling in the face of terminal cancer

By Brett Williamson

Mario Fonovic seated in the palliative care ward of the Queen Elizabeth Hospital.
Mario Fonovic seated in the palliative care ward of the Queen Elizabeth Hospital.

At 55 years of age Mario Fonovic is in the final stages of terminal lung cancer. He doesn’t expect to see the end of 2016, but he is refusing to go without a smile on his face.

“I’m a doer,” Mr Fonovic told 891 ABC Adelaide‘s Mornings program.

Mr Fonovic joined the program to discuss a topic most people dread — death.

“I’ve arranged my funeral right down to my flowers — but don’t bring tissues, bring a tambourine,” he said.

Mr Fonovic said he was neither sad nor scared of his approaching death, and had decided to share his journey on Facebook.

“I can see what is happening to my body,” he said.

“I feel it, I can see it and eventually I will end up in a coma.

“If I can help one person accept death or dying or cancer [I will].

“Just accept what is happening in your life and get on with it, because life is short.”

Looking back on his life, Mr Fonovic said he wished he had only done one thing differently.

“My one and only regret is that as a gay man I never fought to have a child,” he said.

Mr Fonovic said he was lucky to have legally married his partner Sid in a ceremony in California before legislation there changed.

The two plan to move into a newly purchased home together this week and Mr Fonovic is determined he will not die in a hospital.

Too many hospital visits

Mr Fonovic has spent his fair share of time in and out of hospital since being diagnosed with asthma eight years ago.

Being a long-time smoker only made his condition worse.

“Four years ago I coughed … after having one of my last cigarettes and blew a hole in my left lung,” Mr Fonovic said.

His left lung had deflated and he struggled to breathe.

After a week in hospital being treated he was sent home, but within six hours he was back in the emergency department — his left lung had deflated once more.

After another round of treatment Mr Fonovic’s life began to return to normal.

Eighteen months later Mr Fonovic was back in hospital — this time his right lung had collapsed.

“I ended up looking like the Michelin Man as air was leaking into my body,” he said.

He was placed in intensive care and surgeons removed a third of his right lung.

In December 2015 Mr Fonovic visited a respiratory physician to check whether he would be suitable for a lung transplant.

Mario Fonovic having his chest scanned
Mario Fonovic having his chest scanned

During a routine scan the doctor discovered cancer.

“I was so happy the day that I went on the transplant list … because I wanted my life back,” he said.

“In one breath I went, ‘yes’ — and then it was cancer.”

Getting on with it

A burst of stereotactic intense radiotherapy saw Mr Fonovic end up with an infection and he was once more admitted to hospital.

“On the second of May [my doctor] shook my hands and said, ‘you are in remission’,” Mr Fonovic said.

“In the following week I went downhill to the point where I couldn’t walk down my hallway.

“I felt like a semi-trailer had parked on my chest.”

Three weeks later Mr Fonovic admitted himself into hospital for a follow-up scan and found out the cancer had returned.

“The PET scan actually showed how bad it is,” he said.

“Not only had I got the cancer back, but it had taken over the whole lung.”

The lymph nodes on the side of his lungs had stimulated the nerves on his spinal cord and were causing him immense pain.

With the firm belief he would not see his next birthday, Mr Fonovic said he decided all he could do was face death.

“You just put your feet on the side of the bed, pull your trousers on and get on with it,” he said.

The cancer may have wreaked havoc on Mr Fonovic’s body, but mentally he is nowhere near finished with life.

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